NHS Gloucestershire refuses to fund life changing operations for disabled children

CHILDREN desperate to live a normal life are being abandoned by the NHS which is refusing to fund operations that could allow them to walk.

While trusts around the country agree to fund the £23,000 operation, NHS bosses in Gloucestershire are ignoring the desperate pleas of parents and dashing the hopes of these five children, who just want to be like any other child.

All these children have spastic diplegic cerebral palsy, and need surgery if they are to avoid life consigned to a wheelchair.

But there is hope. Pioneering surgery called selective dorsal rhizotomy (SDR) could change their lives forever.

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But NHS Gloucestershire's refusal to fund the operation has forced their parents to raise thousands of pounds to have the surgery privately.

Their families say they feel their children are a victim of a "postcode lottery" because some other NHS trusts in the UK do pay for the procedure.

NHS Trusts for Cornwall and the Isles of Scilly, Plymouth, Derby and Cheshire are examples of trusts that have paid for children to have the specialist surgery at Frenchay Hospital in Bristol.

However, NHS Gloucestershire has never granted a single child funding for the £23,000 operation.

In November, the trust rejected an application to pay for the surgery for three-year-old Skye Swinton, from Arle.

As a result, her parents Ruth and John had to start a fundraising campaign to get together £35,000 for the procedure and subsequent therapy themselves.

Supported by the Echo, they managed to raise the money via generous donations and are now waiting to find out whether or not Skye will be accepted for the surgery at Frenchay Hospital. Ruth, 38, said: "The most frustrating thing is the fact that it's a postcode lottery because some NHS trusts do fund the operation. The fact that children elsewhere get the operation but we do not is very frustrating."

Four-year-old Joseph Skidmore, from Longlevens, had the surgery at Frenchay last summer. His family raised £35,000 after the NHS twice rejected their application for funding.

Joseph has gone from having knees that were clamped together and feet twisted at 90 degree angles to walking with a proper posture with the support of a zimmer frame.

An NHS Gloucestershire spokeswoman confirmed that the trust had not funded a single SDR operation.

Dr Liz Mearns, medical Director for NHS Gloucestershire, said the trust made its decisions on a case-by-case basis.

She said: "Cases such as these are complex, and we have to take into account both the current clinical evidence available and individual circumstances.

"This will also include the advice of doctors and alternative treatments available. We will always consider the latest evidence and guidance on specific treatments."

The National Institute for Health and Clinical Excellence (NICE), which sets guidelines for NHS trusts, advises them to make decisions on whether to fund the surgery on a case-by-case basis. NICE guidelines state that there is a risk of "serious but well-recognised complications" from the surgery, including deterioration in walking ability and bladder function, as well as possible spinal deformity later in life.

12 comments

One of the owners of this website (& the local rags whose content appears on here) is a tax-dodging super-rich hedge fund manager called Crispin Odey, who`s given £8000 to local Tory MPs. He`s also helping to destroy our NHS:
http://tinyurl.com/c5ycx5whttp://tinyurl.com/aavn2js
If the rich paid their taxes we`d have an extra £120bn to fund our NHS.

A couple of comments hitting below the belt here.
Using the misfortunes of five kids to further the vehemence toward a totally differently funded situation is stooping low,even for this newspaper.
I'm sure that realistic suggestions to find the money for the operations would be more than welcome,though.

all this little boy wants to do is run run skip and play its just so unfair yet frank harsnet still gets his big payrise, the idea of the NHS was for a case like this dear little chap to give him the childhood he deserves that is what him mum and dad have paid their NI for. its so wrong and as for heather frost she as never made a contribution yet has 11 children. Anyway good luck little man i hope maybe this article stirs up things and you get the op you so rightly deserve.

HEATHER FROST ARE YOU READING THIS? You're probably not as you're probably counting up all the money you've got stashed under the beds from us taxpayers.But if you are i hope you feel extremely guilty as this poor child needs GENUINE help through no fault of his own and yet you DON'T!

A quick calculation by Moi comes up with a sum of less than £120 Grand to help these kids.
That's probably an amount we give 10 times over to Vinci to be able at Gloucester Royal Hosoital for a year.
How's about it Vinci,can you stump up the dosh and show it's not all about profits ?
It's hardly going to break you .

A mother who chooses to be lazy gets a house worth £400,00 built for her, at no expense for her. A child, who didnt get a choice in his situation, and the NHS wont cough on £23,000 to dramitically improve his life. I know the funds come from different 'pots of money' but it still winds me up!